Sharing the stories of those affected by Autoimmune disease

Grave’s Disease

I recently read a post on Reddit on the r/autoimmunity subreddit titled ‘Losing Everything‘. In the post, the author describes being diagnosed with Sjogren’s Syndrome, an autoimmune condition affecting one’s moisture-producing glands. The author has also been living with other autoimmune diseases, including Graves’ disease, Hashimoto’s Thyroiditis and Granulomatosis with Polyangiitis (GPA), for quite some time.

She goes on to say that since being diagnosed with these conditions, she feels like she is losing everything that makes her ‘herself’. For example, she is an artist, but she has lost the use of her dominant hand as a result of her conditions, leading her to quit her art. She also had a unique style, with beautiful thick hair and piercings. However, most of her hair has now fallen out and she had to remove her piercings due to constant infections.

The author’s post made me think of my own struggle with chronic illness and how having Sjogren’s Syndrome, Hidradenitis Suppurativa (HS) and Benign Fasciculation Syndrome (BFS) has impacted my sense of self.

Although I have both good days and bad days, I often resent my body and these diseases for what they have ‘taken away’ from my life. I often think to myself, what would I have accomplished by now had it not been for this disease? Would I be further along in my career? My education? Would I have more social connections and deeper friendships? It’s hard to quantify, but I feel like my life would have been very different had I not developed autoimmune issues. In other words, I don’t feel like I can be my true ambitious self because of my chronic illnesses.

I could also relate to the author’s mention of her outward appearance, like her hair and piercings. I notice that I often think ‘why bother?’ when it comes to things like fashion and beauty, which were important to me before my diagnosis. I think this is because I’ve adopted the mindset that I am ‘diseased’, so why bother to look nice? This is definitely a negative mindset that I’m continuing to work on, but, I think it’s important to acknowledge how chronic illness can impact your sense of self- whether it’s your own self-image, or even your outward appearance.

I also recently read a powerful testimony on The Mighty by Megan Klenke titled, ‘How Chronic Illness Can Drastically Affect Your Self-Esteem’. In her post, she describes the shame that many individuals with chronic conditions and disabilities face, such as having to ask for help to do tasks that they once did independently, using a wheelchair, or dealing with embarrassing side effects of medications. Furthermore, Megan also points out that simple things like missing family functions or get-togethers with friends as a result of illness can make one feel left out and like an ‘awful’ family member or friend.

A YouTuber I follow named Samantha Wayne also created a video detailing her struggle with the impact of lupus on her self-image. She ended up being hospitalized and had to take time off to rest. During this time, she says she felt useless and like she wasn’t doing enough. Also, she had to step back from her job because being on her feet all day was taking a toll on her health. The medications she was taking, such as prednisone, also impacted her outward appearance.

Samantha did say that leaning on her support system has helped her to get through negative feelings about her self-worth. She also says that realizing that everyone is worthy, regardless of their health status, has also helped. Furthermore, she says that while her disease caused her to lose certain hobbies, like competitive basketball, she was able to adopt new hobbies and learn new skills such as video blogging on her YouTube channel, which she started in order to raise awareness about lupus. Finally, she says that practicing gratitude for the things she can do and what she has is another way that has helped to overcome her low self-esteem.

Has having a chronic illness impacted your self-confidence, and if so, how have you handled it? Let us know in the comments below!

Pop singer Sia recently revealed in a Tweet that she is battling chronic pain as a result of an autoimmune disease and another genetic condition.

In the Tweet, Sia said, “Hey, I’m suffering with chronic pain, a neurological disease, [and] ehlers danlos and I just wanted to say to those of you suffering from pain, whether physical or emotional, I love you, keep going,” she wrote. “Life is fucking hard. Pain is demoralizing, and you’re not alone.”

Sia suffers from an autoimmune condition called Grave’s disease, which occurs when the body’s immune system attacks the thryoid gland. This results in hyperthyroidism, which is the overproduction of the thyroid hormone. Without treatment, the disease can result in heart problems like irregular heartbeat, blot clots, stroke, and heart failure, as well as eye health issues, like double vision, light sensitivity, eye pain and vision loss. It can even lead to thinning bones and osteoporosis.

In addition to Grave’s, Sia has Ehlers-Danlos Syndrome, a genetic condition and connective tissue disorder that can affect one’s bones, joints, skin and blood vessels.

Sia’s Tweet has garnered over 170,000 ‘likes’ on Twitter and has many fans responding with well-wishes and sharing their own experiences with chronic illness. One fan tweeted, “We love you so much Sia, you’re not alone either, please take care ❤ sending you lots of love and healing vibes.”

Her Tweet also draws similarities to Jameela Jamil’s Instagram message, in which she also revealed that she has Ehlers-Danlos Syndrome and another autoimmune disease called Hashimoto’s Thyroiditis, which causes hypothyroidism (the opposite of Grave’s Disease).

Philippines Leader Rodrigo Duterte Says He Has Autoimmune Disease

The President of the Philippines, 74-year-old Rodrigo Duterte, says he suffers from an incurable autoimmune disease. The condition, called myasthenia gravis (MG), is a neurological disease that causes weakness in the skeletal muscles, according to the National Institute of Neurological Disorders and Stroke. The disease can also affect eyelid movements, facial expressions, talking, chewing and swallowing.

Myasthenia gravis occurs when the body’s own immune system attacks the neurotransmitter receptors on one’s muscles. This prevents the neurotransmitters responsible for muscle contraction from binding to nerve endings, thereby preventing muscle contraction. This results in the widespread muscle weakness that is the hallmark of this disease.

Duterte believes that he inherited the condition from his grandfather, who had myasthenia gravis as well. “One of my eyes is smaller. It roams on its own,” he said, according to a transcript released Sunday by his presidential office.

Although Duterte appears to be in relatively good health, and myasthenia gravis can be managed with treatment, about 20% of the people with the disease will experience a health crisis at some point in their lives.

Did you know that the following celebrities have autoimmune diseases? Unfortunately, being an A-lister does not exempt you from having health problems. Read on to learn about their powerful stories of hope and living with chronic illness.

1. Selena Gomez

In 2015, it was revealed that Selena Gomez suffered from Lupus, an autoimmune condition that causes the body to attack its own vital organs, skin, joints and other tissues. Selena also disclosed that she was undergoing chemotherapy as part of her treatment.

Her life took a dramatic turn in 2017, when her doctors advised that she would need a new kidney. Thankfully, her best friend, Francia Raisa, generously donated her own kidney to Selena, undergoing an intensive, 6-hour organ transplant surgery. Although the surgery seems to have had a positive impact on Selena’s physical well-being, she admits that Lupus has also taken a toll on her mental health, causing her to experience depression, panic attacks and anxiety. She has become an advocate for Lupus awareness, and was co-chair at the 2017 Lupus Research Alliance Gala.

2. Venus Williams

Tennis all-star Venus Williams shocked the world in 2011 when she revealed that she had been diagnosed with an autoimmune condition called Sjogren’s Syndrome. Sjogren’s primarily affects the body’s moisture-producing glands, resulting in symptoms such as dry eyes and mouth, severe fatigue, and joint pain.

Multiple Sclerosis (MS) is an autoimmune disease of the nervous system, and can result in a diverse range of symptoms, from mobility and speech issues, to pain and even blindness. Jack revealed in an interview that he was diagnosed with MS after noticing a black dot in his vision, that turned out to be optic neuritis, an inflammation of the eye nerves that resulted in 90% blindness in his right eye. Despite the diagnosis, Jack is determined to live a fulfilling life, and has partnered with a neuroscience organization to create the international campaign “You Don’t Know Jack About MS” to raise awareness about the disease.

4. Wendy Williams

Wendy Williams shocked viewers when she fainted on live TV during an airing of her daytime talk show, Wendy. When she returned after a three-week, doctor-ordered hiatus, Wendy revealed that she had been diagnosed 19 years prior with Grave’s Disease, which may have contributed to her fall.

Grave’s Disease is an autoimmune condition that affects the thyroid gland. Symptoms are varied, but may include hyperthyroidism (overactive thyroid), bulging of the eyes, heart palpitations, weight loss, and fatigue. During a segment with Dr. Oz, she discussed her struggle with the condition, and has used her platform to raise awareness for the disease.

5. Winnie Harlow

24-year old model Winnie Harlow rose to fame at a young age as a contestant on Tyra Banks’ reality TV show, America’s Next Top Model. The Canadian model revealed that growing up, she had been a victim of vicious bullying due to having a chronic autoimmune skin condition called Vitiligo, which causes the destruction of melanocytes, resulting in a depigmentation of the skin.

Winnie did not allow her autoimmune condition to stop her modelling career, however, and has modeled for international brands such as Desigual and Swarovski. She has become an outspoken advocate for self-love, presenting a TedxTalk on the topic and participating in Dove’s Real Beauty campaign.